When my son was in third grade he started to have these unusual movements, which later also included vocalizations. The movements became so severe that my son was not able to go to school because the incidents would continue for hours and hours. Typically they occurred in the night, which in turn deprived him of sleep.
My son also has myoclonic epilepsy, occurring in the frontal lobe, and upon observing and conducting an EEG, the neurologist indicated that the movements did not have the characteristics of epileptic seizures. He concluded that they were non epileptic seizures. We then began work with a neuropsychologist regarding how to deal with this unusual activity.
After I got the medical community working on the seizures, I also had to deal with my son’s school My concerns with school was that I didn’t think they would be able to deal with these events while providing a safe environment to continue his education. Eventually, I took my son to school. They were shocked about what was happening. My son went to class while I talked with the principal, nurse and school psychologist. My son walked into the school as he was having these movements and continued to have them in the classroom.
I told the principal that they were not prepared to have my son in school. My son’s movements were extreme and he could potentially hurt himself while being at a desk. Who was watching him as he walked in the hall and prevent him from hurting himself if the events should cause him to fall down? Who is making sure he doesn’t poke himself with a pencil? What are you going to do about the loudness of his yells? How are you going to give him some privacy? How are you going to handle the other students when these events happen? My son’s vocalizations sounded like yells of pain? Who is going to differentiate these movements from his actual epileptic seizures? Soon, here came my son’s teacher along with my son. She said that he could not be in class yet until they got a little more organized. In the end I told the school I would obtain from our neuropsychologist recommendations for accommodation. Once those items were in place we would re-convene coming to school. Then we left. The second reason for this decision was the school could not accommodate his ability to learn when he would have these non epileptic seizures for hours in the night, causing loss of sleep. I needed to be able to teach him when he was capable of being taught. The school did not understand that a young man can not learn while his body is jerking and he is uncontrollable yelling. Or, he is not able to learn when he has only had two or three hours of sleep.
A couple of weeks later the school contacted me to review their plan and accommodations that they had in place for my son. It included gradually getting him back into the routine of coming to school, starting out with an hour and slowly working up to full-time. To compensate for the abbreviated school day they provided him with a tutor, which is where I made one of my mistakes. The tutor they selected was his actual third grade teacher. Later I found out that she was one of the reasons that was causing my son’s anxieties, which then triggered the non epileptic seizures. They created a screened off area of the classroom where my son could go while he was having one of these events. It gave him privacy and it contained a bean bag to provide some safety. Finally they provided an aid that would accompany my son wherever he went. This also turned out to be a big mistake. The aid would say things implying my son was faking these seizures, which in turn triggered non epileptic seizures. It was a vicious cycle.
In the end, my son finished the school year, but this event was the beginning of a continuous decline in his ability to learn in the public school setting. My son is now in 7th grade and this year we decided to do homeschooling because the school could not accommodate for his needs and continue providing him a “productive” education. The trigger that made me make this decision was that in 7th grade he was working on the same math that he had been working on in the 3rd grade. They were not making any progress. Meanwhile, I knew my son was a bright individual, especially toward math. Before he even went to kindergarten he had figured out on his own the concept of addition and subtraction.
It is now 4 years later and my son is still having these events, but they have drastically decreased as a result of taking him out of school. We have worked with neuropsychologist for the last 4 years with the goals of 1) identifying triggers for the events, 2)what to do when he has an event and 3)general lesson on how to reduce his anxiety. This also included learning bio-feedback. While seeing this neuropsychologist, we identified the fact that my son was having a combination of epileptic seizures, non epileptic seizures and Tourette Syndrome.
One other topic that you may run into is P.A.N.D.A.S., which is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. When my son was young, from the ages of one to two, he had severe ear infections, which eventually led us to have tubes put in his ears, which completely eliminated the ear infections. Later, I found out that when there were outbreaks of strep throat at school he didn’t get sick himself, but was a carrier of it which usually caused me to get strep throat. Of course this is all theory on my part, but it is interesting that my son may have a relationship to P.A.N.D.A.S.
Hopefully this post helps with your understanding of non epileptic seizures. I am including below some definitions of some of the term you may hear about with non epileptic seizures or with Tourette Syndrome.
Psychogenic non-epileptic seizures (PNES): , also known as Non-Epileptic Attack Disorders, are events superficially resembling an epileptic seizure, but without the characteristic electrical discharges associated with epilepsy. Thus, PNES are regarded psychological in origin, and may be thought of as similar to conversion disorder. It is estimated that 20% of seizure patients seen at specialist epilepsy clinics have PNES. The differential diagnosis of PNES firstly involves ruling out epilepsy as the cause of the seizure episodes, along with other organic causes of non-epileptic seizures, such as syncope, migraine, vertigo, and stroke, for example. However, it is important to note that between 10-30% of patients with PNES also have epilepsy. Frontal lobe seizures can be mistaken for PNES, though these tend to have shorter duration, stereotyped patterns of movements and occurrence during sleep. The condition may also be referred to as non-epileptic attack disorder, functional seizures, or psychogenic non-epileptic seizures. Within DSM IV the attacks are classified as a somatoform disorder, whilst in ICD 10 the term dissociative convulsions, is used, classed as a conversion disorder.
Pseudoseizures or Hysterical Seizures: While it is correct that a non-epileptic seizure may resemble an epileptic seizure, pseudo can also connote “false, fraudulent, or pretending to be something that it is not.” Non-epileptic seizures are not false, fraudulent, or produced under any sort of pretense.
Conversion disorder: 1. A type of somatoform disorder in which unconscious psychological conflicts or other factors take the form of physical symptoms that are produced unintentionally. 2. Somatoform disorder in which an individual presents sensory or motor symptoms that do not have a medical explanation
Somatoform disorder: a mental disorder characterized by physical symptoms that suggest physical illness or injury – symptoms that cannot be explained fully by a general medical condition, direct effect of a substance, or attributable to another mental disorder (e.g. panic disorder). The symptoms that result from a somatoform disorder are due to mental factors. In people who have a somatoform disorder, medical test results are either normal or do not explain the person’s symptoms. Patients with this disorder often become worried about their health because the doctors are unable to find a cause for their health problems. This causes severe stress, due to preoccupations with the disorder that portrays an exaggerated belief about the severity of the disorder. Symptoms are sometimes similar to those of other illnesses and may last for several years. Usually, the symptoms begin appearing during adolescence, and patients are diagnosed before the age of 25 years. Somatoform disorders are not the result of conscious malingering (fabricating or exaggerating symptoms for secondary motives) or factitious disorders (deliberately producing, feigning, or exaggerating symptoms) – sufferers perceive their plight as real. Additionally, a somatoform disorder should not be confused with the more specific diagnosis of a somatization disorder. Mental disorders are treated separately from physiological or neurological disorders. Somatoform disorder is difficult to diagnose and treat since doing so requires psychiatrists to work with neurologists on patients with this disorder. (Wikipedia)
P.A.N.D.A.S.: an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome, and in whom symptoms worsen following strep. infections such as “Strep throat” and Scarlet Fever. The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep. throat infection. What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and “attack” the heart valves, joints, and/or certain parts of the brain. This phenomenon is called “molecular mimicry”, which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance. In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea. (information provided for by http://intramural.nimh.nih.gov/pdn/web.htm )